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Alzheimers Association Apology.
Michael Ellenbogen
Posted: Thursday, April 2, 2020 5:27 PM
Joined: 11/30/2011
Posts: 4273


I would like to see a public apology from the Alzheimers Association for them deleting my threads. As a person with this disease I go thru great lengths to write and place thing out to this community. I try to insure I am accurate and sometimes spend hours to put together my response. Very frustrating when they are deleted and I have no Idea it happened. This creates to much confusion for me.  

 


gubblebumm
Posted: Thursday, April 2, 2020 5:44 PM
Joined: 7/12/2017
Posts: 1774


This site is getting very odd, overly religious, pollyana-ish and reactionary if one person complains.  We ALL deserve to b heard and hiding from the truth does no one here any good

And I think you should be able to share your posts and thoughts and information.  We are not in a bubble here, far from it and information is needed, truth is needed, not this oh lets all get along garbage


zauberflote
Posted: Thursday, April 2, 2020 7:20 PM
Joined: 10/24/2018
Posts: 1506


Michael, that is a new height of awful irony, for an organization which is supposed to support PWD to silence a poster with dementia. Evidently they wish to rewrite internet history to favor someone else than the very population they have said they wish to serve. 

Gotta say, I value all your posts highly!


GothicGremlin
Posted: Thursday, April 2, 2020 7:37 PM
Joined: 4/7/2019
Posts: 380


Michael, I may not always post, but I always value your posts, and I've learned so much from you.  Hopefully, the powers-that-be will see this thread and lighten up a bit.

And from gubblebumm: This site is getting very odd, overly religious, pollyana-ish and reactionary if one person complains.  We ALL deserve to b heard and hiding from the truth does no one here any good

I absolutely agree. This disease is horrible and stressful as it is, and this place can be a lifeline. Deleting posts may have a short-term benefit to some, but (imo) in the long run, it's short-sighted as it erodes trust.


jfkoc
Posted: Thursday, April 2, 2020 7:40 PM
Joined: 12/4/2011
Posts: 20791


I sometimes wonder if the moderators have or have had a close and long experience with a loved one with dementia. A person can have all the training in the world and not get it. Perhaps it should be a prerequisite to have taken care of someone with dementia.
Jo C.
Posted: Friday, April 3, 2020 4:11 AM
Joined: 12/9/2011
Posts: 12919


It is really important to know that IF for a significant reason, a Post or Thread is deleted by an Administrative Moderator, in ALL cases, they will notify the individual Member that this is being done and the reason why. There are no exceptions to this.  If a person has not been contacted and notified, then no one at the Alzheimer's Association has removed the Post.

In all other instances, only a Member can delete his or her own Posts EXCEPT:  If the Member is Posting on someone else's Thread, the person who initiated that Thread can delete said Thread.

So; if a Post disappears and one has not been notified of this by an Administrative Moderator, then that Post was not removed by anyone at the Alzheimer's Association.

I have been on the Message Board since 2006, and been a Peer Volunteer since 2009; in all contacts for any personal issue or other interaction, I have found those professionals on the team who administer this Message Board to be very caring and very supportive of myself and my care challenges, and also deeply caring and supportive of all of the Members as they work diligently to support and care for this Message Board .  The word, "Moderator" is a blank word that come from technology.  It is faceless and unknowing.   It does not describe the individual professionals behind the scenes in Administration who are dedicated to striving to provide and oversee (Moderate) this wonderful service to so many; and that is no small thing.  As said, I have had very good support regarding my own experience in the very difficult days I had with my Loved Ones with dementia or when I have had a problem issue that I felt needed to be addressed..

NOTE:  If you have a problem concern or need assistance; if you wish to communicate that to the Administrative Moderator Team, at the top of this page you will find a prompt that says, "Contact Us."  You can use that to reach a variety of assistance including communicating with someone on the Administrative Team that "Moderates" this Message Board and you will get feedback.  I have found that to be helpful.

 J.


Michael Ellenbogen
Posted: Friday, April 3, 2020 7:04 AM
Joined: 11/30/2011
Posts: 4273


 Please do not make excuse for them as they have deleted many of mine in the past and never said anting until I reached out to them. All I want is my data that I had worked so hared to get from key people who had helped me with my replies. This place is so one-sided with their views. They always think they no better and most time they don’t. I am tired of going to top management as they dot do anything to make it better. 


dayn2nite2
Posted: Friday, April 3, 2020 8:33 AM
Joined: 6/20/2016
Posts: 3129


Michael, you are spamming all the boards with the same posts and even the same reply to Jo!  Please stop.  Nobody cares about an apology but you, they aren't obligated to tell you why or apologize to you at all.  You do this all the time, you place the same post on all the boards, like when you were advertising the wealth management people (Creative Planning) yesterday, which is against the board TOS.  Just stop.
Michael Ellenbogen
Posted: Friday, April 3, 2020 8:49 AM
Joined: 11/30/2011
Posts: 4273


 Alzheimers Association claims to care about those with dementia but for 10 years working with them they ignored most request to help those living with dementia. I have a few great friends at the top but sadly this organizations is extremely slow to change for many of the wrong reasons. They care more about themselves then doing good to change things for those living with dementia. I have seen that time and time again. I can assure you I gave them many opportunities and I was very slow to learn that because I have people there that I real like as friends. Not sure they still consider me that.  For years I fought for them and told others they were wrong but there is only so much one can say before you realize that they will not change but you tried so hard to make that happen.   

 

I wants use to give them thousand a year in donations but I stooped that 5 years ago because of all of this. I had even remove them from my will which they would have had a big chunk of change. All of the organization work together to be in this fight and meet at the table monthly except AA. So what does that tell you about them.

That is why I have donated tons of my money to https://www.usagainstalzheimers.org/

 

I strongly recommend you do the same. Those people have taken many of my ideas and they are all happening in many places. Don’t get me wrong they still do some good things but it could be 60 percent better if they listened. So many of you would have it so much better if they only implemented my recommendation which they refused. That is why you all struggle for help when you need it.

 


Michael Ellenbogen
Posted: Friday, April 3, 2020 8:55 AM
Joined: 11/30/2011
Posts: 4273


 dayn2nite2 -The information I shared from that company was some of the best out there to help people in need. Maybe it over your head to understand that as it was not an advertisement. It was to help educate those that need it.  


Michael Ellenbogen
Posted: Friday, April 3, 2020 9:04 AM
Joined: 11/30/2011
Posts: 4273


By the way I paid for that information and I was given the approval to share it for free to those who need it here. 


OneofThreeDaughters
Posted: Friday, April 3, 2020 2:01 PM
Joined: 8/12/2019
Posts: 40


The original post is inappropriate on this particular forum. I am sorry that you have Alzheimer's sir, and that you are having trouble with your posts, but this is the caregiver forum and your topic is not at all relevant to caregiving issues. Please attend to the rules of the forum. I am reporting this post.
Lane Simonian
Posted: Friday, April 3, 2020 2:11 PM
Joined: 12/12/2011
Posts: 5089


Michael is free to post this opinion wherever he wants to.  I think it is important to maintain posts, so that we can easily go back and read them.  Just because someone says something that we dislike is not a reason to report or delete posts.  
OneofThreeDaughters
Posted: Friday, April 3, 2020 2:23 PM
Joined: 8/12/2019
Posts: 40


Lane Simonian wrote:
Michael is free to post this opinion wherever he wants to.  I think it is important to maintain posts, so that we can easily go back and read them.  Just because someone says something that we dislike is not a reason to report or delete posts.  

Whether I like or dislike his post is irrelevant, I agree. It is simply inappropriate on this section of the forum, and if you do a little digging, you can see that he has several bones to pick and is on a mission to paper the forums with them.


Lane Simonian
Posted: Friday, April 3, 2020 2:42 PM
Joined: 12/12/2011
Posts: 5089


He has a disagreement with the Alzheimer's Association over a number of issues, one being the deletion of posts.  His concerns may be irrevelevant to some caregivers, but relevant to others (for example, whether to donate to the Alzheimer's Association or to another organization).  Sometimes people with dementia have objected to caregivers and spouses posting on "their" forums and vice versa, but there is no reason why a person with something to say is limited to a particular forum.
jfkoc
Posted: Friday, April 3, 2020 3:43 PM
Joined: 12/4/2011
Posts: 20791


Thankfully there are no rules which limit posts to a particular forum...this is really good for it allows caregivers to learn from our members with dementia and vice-versa. In addition some very strong friendships have developed because of this and some our members who have dementia and no "caregiver" now have some " adopted caregivers".

As to relevancy? Wel,l who is to say what is relevant.


ladyzetta
Posted: Friday, April 3, 2020 9:22 PM
Joined: 2/16/2017
Posts: 1704


I am glad we have no rules as to what board we can post on. 
My DH passed away 2 years ago so I am no longer a Caregiver, but I still have things to offer the Cargivers. I was his Spouce and I still am so I feel I still have tings to offer, I also have things to offer Younger Onset, so please dont judge where people need to post, remember we are here to help each other.  

  


Michael Ellenbogen
Posted: Saturday, April 4, 2020 7:25 AM
Joined: 11/30/2011
Posts: 4273


If you are going to be a detective and trying to help your loved one then it helps to understand the minds of those living with dementia.

Sure it may be not a big deal to you but this is a huge deal to me. Why are your issue more important than mine when I think they are a huge impact on my life.

It takes me hours to write replies at time. I spend a lot of time insuring accuracy of the information I provide. I have other experts sometimes help like I did in the one that was deleted.

My goal of that conversation was to help educate others on pharma and give caregivers a better understanding of why they should like Biogen or at least not hate them.

 

The Alzheimers Association claims they support people with dementia and tries to encourage them to be part of society. You would never know that by how they act and treat people like us.

I want to be treated with respect as that is important to me till the end and they do not do that. They have a few people that they play favors to who live with dementia who are there puppets.

I am not one and will never be as I challenge everyone to do better for all of those impacted. Prime example they sat on NAPA committee for 6 or more years and they never fought as hard as I did to make it better for those with dementia. It was the one who opened up the doors to have person living with dementia to be on the NAPA committee. I brought AA to my meeting as my invite. For years no person wth dementai from our country could be heard out side of the NAPA meting room. I just won a class action against NAPA and they will now give people with dementia the rights to dial in from their home to finally have a voice.

You should ask why they did not do that. And not to mention it when I had made a error in what I said at NAPA many years ago instead of standing by me like all of the other organizations around the world they thru me under the bus publicly but gave me false hope behind the scenes and I was even and Ambassador of them and a ESG member. Other organizations came to my recue to help get me out of the mess.

 

They did absolutely nothing. I have done more for this arena more then you could ever imagen. I don’t look for awards and dont want them but I just wont the respect. I am far from perfect and much worse now then ever but please show me the respect.  I have enough issues in not trusting my self and don’t need more from AA who claims they want to help me. 


BethL
Posted: Saturday, April 4, 2020 12:20 PM
Joined: 3/25/2015
Posts: 1011


Michael, I'm sorry this has happened. I suggest you call or email AA, rather than posting this on the forums. I'm not sure staff from AA even reads the forums, other than if someone reports a post.
jfkoc
Posted: Monday, April 6, 2020 7:58 PM
Joined: 12/4/2011
Posts: 20791


why does it indicate posts being made time wise but none show up?
Lane Simonian
Posted: Monday, April 6, 2020 8:53 PM
Joined: 12/12/2011
Posts: 5089


If you edit a post, the whole thread moves up to the top.
Iris L.
Posted: Monday, April 6, 2020 9:40 PM
Joined: 12/15/2011
Posts: 17952


I think Michael is complaining here because the AA is not responding to him.  I never heard of the NAPA group.  But Michael can post on any board.

Iris


dayn2nite2
Posted: Monday, April 6, 2020 9:52 PM
Joined: 6/20/2016
Posts: 3129


They’re not going to respond here or anywhere, just as they don’t respond to anyone else here.  Nor do they notify people when posts or threads are deleted, plenty of my posts are deleted and they don’t notify me and I wouldn’t care if they did.  Everyone is treated the same around here.
Michael Ellenbogen
Posted: Tuesday, April 7, 2020 7:09 AM
Joined: 11/30/2011
Posts: 4273


dayn2nite2 - We are all treated very different and that is why you should be pissed off and want change. There were many times in the past that they did reach out and offered the data.

 

Sometimes you were able to have them ignore deleting it once they understood what was meant.

 

They should not judge with out speaking to the people involved.

If they trully care about peolpe with demantai then they will make an Apology. 


Michael Ellenbogen
Posted: Tuesday, April 14, 2020 10:34 AM
Joined: 11/30/2011
Posts: 4273


 Why is it so hard for some to say "I’m sorry"? It’s remarkable how I knew that the Alzheimers Association would never do it as they don’t care about those with dementia and only themselves. This just proves I have always been right about them. Their motto is to just ignore it.  


dayn2nite2
Posted: Tuesday, April 14, 2020 11:17 AM
Joined: 6/20/2016
Posts: 3129


Stop spamming the boards with this same post.  Nobody cares but you.
TessC
Posted: Thursday, April 16, 2020 10:30 AM
Joined: 4/1/2014
Posts: 5211


To say nobody cares is wrong.  You may not care and that is fine, but I care, as do many other people who understand that PWD often get fixated on an issue and feel the need to bring it up. Sure, this is a caregiver forum, but if we never hear from PWD who can still talk, we will lose a lot of insights into the disease that perhaps our own LO's can no longer verbalize.
MissHer
Posted: Thursday, April 16, 2020 11:12 AM
Joined: 11/13/2014
Posts: 2366


I care.
Michael Ellenbogen
Posted: Thursday, April 16, 2020 1:10 PM
Joined: 11/30/2011
Posts: 4273


 Thank you so much for those who support me. While I know this may seem small compared to the issues you deal with it means so much to me.  


jfkoc
Posted: Thursday, April 16, 2020 1:41 PM
Joined: 12/4/2011
Posts: 20791


I care....always have...always will
Lane Simonian
Posted: Thursday, April 16, 2020 6:31 PM
Joined: 12/12/2011
Posts: 5089


Me, as well.  Every once awhile threads are locked rather than wiped out entirely.  That seems like a better way to handle controversial threads.  If a post is particularly offensive then maybe just delete that post.  A lot of time and thought can go into a post and it does not seem right to eliminate people from seeing that post just because other posts might be considered too inflammatory.
lizziepooh
Posted: Monday, April 20, 2020 2:11 AM
Joined: 5/2/2019
Posts: 390


I agree that this site should go back to locking threads than removing them, if they are going to do anything.

That would solve Michael's issue of not being able to find his posts and it would help the rest of us.

I believe they should clarify why they made that action when they do it. I think it would be wise to be clear on where the line is.

Removing threads is overkill and lazy. It means they just do not want to deal with our petty sh--. Fine, so set the expectation. Be clear where the line is so your posters understand.

You may even have less work in the long run if you are clear.

 


Michael Ellenbogen
Posted: Monday, April 20, 2020 8:18 AM
Joined: 11/30/2011
Posts: 4273


 I think that would be a great idea to just lock them out. That is a very good compromise. 


Michael Ellenbogen
Posted: Monday, April 20, 2020 8:21 AM
Joined: 11/30/2011
Posts: 4273


To Alzheimers Association Moderators who monitor this site. Have any of you folks made the Alzheimers Association aware of this request?  


dayn2nite2
Posted: Thursday, April 23, 2020 11:56 AM
Joined: 6/20/2016
Posts: 3129


Well you're always telling us all the higher ups you know in the organization, I'm sure they're assuming you've told them.
 
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